A Fundamental Right Quashed

Carol has been well for 25 years, but the memories of her time with ME/CFS were still fresh. She’d just graduated from graduate school when she, like so many others, got a flu that never lifted. It was years before Carol recovered – years during which she was able to experience the full weight of the medical community’s rejection.

As she talked, it was clear that it wasn’t just the debilitation, although at one point it was extreme (taking a shower was all she could muster for the day) or even the pain that she experienced, that really got to her. It was the rejection by the medical community.

Many men and women with ME/CFS, of course, experience medical rejection, but for women, particularly professional women with careers like Carol, there’s probably an extra bite to it. To have worked that hard and then not to be believed when you’re really hurting; that clearly cut deep for Carol.

In her Fall 2016 President’s letter Carol referred to  not just the pain of the disease or the diminished lives it brings but “the barely veiled disdain from those who question whether we are really sick”.

It was as if she felt that a fundamental right – the right to be believed and taken seriously – had been squashed.  I got the idea that ME/CFS is more than a medical problem for her; it’s also, given how she and others have been treated, a women’s issue.  When she saw the job opening at the SMCI she said she had to have it….

Read the entire article here: https://www.healthrising.org/blog/2017/05/02/passionate-pragmatist-carol-head-fight-mecfs-equality-smci-pt/